No News is Good News...

His special shirt from his friends.

 I do hope the fact that I waited two weeks to post has not alarmed anyone. As I have stated before sometimes we are just busy and I never want my post to feel like a "have to" on my list. I did post a few quick updates on my FB wall, but when we returned it was still really busy here and then came Spring Break. If you read the long version of this post you will understand why a new update has not been a priority.

Bub absolutely LOVES the freedom of the pool!

The Basics:

• How is Ayden? - He is currently SEIZURE FREE! 
• Are we headed back to Milwaukee soon? - Not until this summer.
• Is he making gains again? - YES! We have heard things in the past week that disappeared months ago.
• Did we get to go on vacation for break? - Tennessee was postponed, but yes we had fun. :)

Where do I begin the LONG VERSION...well let's go back to the hotel when I posted last. Bub and I had a great morning, he made sure to ask for a napkin when he spilled milk all over his iPad and I was able to pack everything up pretty quickly so we had lots of time. We even relaxed in the room for a bit after breakfast, we were set and on time to be an hour early (enough time to get some lunch and find where we needed to be). OK, yes those that know me find that last sentence hard to believe, but I always plan lots of time for appts. like this. The morning was going great until just outside the city. This slight knock I heard from my truck become a very loud noise quickly and I found myself watching every mile marker as we approached our exit. As I exited the highway my truck stalled at the stop. I knew I only had two city blocks to go so I shut it off and turned it back on each time it stalled at intersections. Yes, I knew I was likely killing the truck but I was getting Bubba to his appt. no matter what. It stalled one last time in front of the hospital, yes I did get some looks, but we made it! Then I called for a tow truck... We sat in front of the Children's Hospital for an hour, I called at one point to let them know I could wave through the window, but we would be late because we could not leave the truck.
  Despite being late Ayden was hooked up and ready to roll quickly. He did fairly well with it all and started seizing enough for the nurses to call them seizures and not "episodes" within about two hours. The original plan was 24 on VEEG to collect data, then 24 hours on the new med. Within 3 hours they wanted the med because they had all the data they needed. Of course that required an IV so we met several IV teams (Transport, NICU, ER) and about 7 attempts later they were done. The important thing here is once they were done Ayden calmed down and still talked to his nurses, this is a huge improvement. We started the Depakote around 4 PM and I still noted events through the evening and in the morning. He took the medicine very well orally which was a huge surprise for me given all the meds we have struggled with before. The best part was some reinforcements came to help out. Mom and my brother, Justin, drove up late Friday and I was ready for a break when they came Saturday morning. Bub was good with Mami's undivided attention, and could have cared less if I went home at that point!

Our doctor came and explained what they captured and the plan. He said the had significant seizure activity within those first few hours, enough to prove the need to stop them. The Depakote reduced the EEG activity by 70% almost immediately. He was really happy and surprised it worked so well so fast, but wanted his level higher before we went home. He also wanted to make sure it wasn't just an fluke. They increased the med and sent us home on Sunday. Justin drove us over halfway since my truck was not leaving WI anytime soon.  Unfortunately, Ayden got sick in the car on the way home and then again the next night, and the next day. With all of the vomitting we started having trouble with the meds because Ayden decided he was over it.
  Ever met Ayden? Ever met me? Ever met Justin?  

Well, when Ayden decided to be DONE it became WWIII at our house. I used every tool in my child life degree, TRUST ME!!! I started battling in the mornings and could only get him to take it with the threat of no school, that worked only when the bus was actually IN our driveway waiting. At night I put him in time out on his stool until he took it. Yes, we tried bribes first...candy, cookies, etc. It got harder as the week went on and he was throwing up what we could get in some nights. The one night we spent over two hours trying, we had dramatically bagged up almost every toy the kid owned and he finally took half his does before he was too tired to stay awake...Ever since at night he has taken it. Maybe he figured out that his stubborn pride was genetic and together mom and dad really could outlast him. We don't talk about it, but he knows it is hiding in the cereal bar and just doesn't want to fight about it anymore. Prayers were answered!

So that is it?

The vomiting stopped after a week. The doctor backed the dose back down because we called and shared our dramatic first week and he is still seizure free. We waited on the blood draw a few extra days since some doses were not right the week before. The results were received on Friday and the nurse called to tell us his ammonia level was high. Depakote is not a new med for Ayden he was on it years ago and it spotted his liver then. So now we wait, the seizures are stopped, but his body needs to be able to process the medicine correctly.  Time will tell I guess, yes as his mother, I am worried. However, seizure freedom is AWESOME! We changed our original plan to go to the Smokey Mountains for a few days, since my truck needed a new engine. However, we were able to make a vacation out of the trip to get my truck when it was done on Thursday. It was nice to do something as a family, and for Bub it was nice to go somewhere WITHOUT being poked. :) We went to a few of the places we talked about on our previous trips and Sis was able to see the "Milwaukee" we had been talking about. Prayers were answered and I have no doubt that Wisconsin Children's is where we are to be from now on. I could write an entire post about the amazing differences in facilities, procedures, and most importantly the staff. CHOW even has its own navigation icon on my phone. :) Thank you so much for all of you prayer warriors out there, especially all of our Blue Ball Family that never fails to keep Bub in prayer.

Now, we hope to enjoy the new Ayden with a bit of a sparkle in his eye again.

 Remember, no news is good news! :)